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FARAFARA Cure FA

Emory University FA Patient Symposium 2016

EmorySymp2016 room

For being the first time to have a symposium in Atlanta, I want to preface what got me here and why I am so excited for FA patients.

I grew up in Atlanta and currently live 10 minutes from Emory University. I had never heard of Friedreich’s ataxia (minus the very little I had come across on Google just prior) until my diagnosis 10 years ago by an Emory University neurologist, known to specialize in ataxia, Dr. Chip Wilmot. There are over 100 known types of ataxia. FA is the most common hereditary form, affecting an estimated 1 in 50,000 in the US. Emory University (and Dr. Wilmot as the principal investigator) is one of a dozen sites in the worldwide Collaborative Clinical Research Network in Friedreich's Ataxia (CCRN in FA), actively a part of clinical research and trials to advance treatments and care in FA. A huge thanks to FARA funding the CCRN in FA, this disease is incredibly understood. I am data-obsessed and I do my homework! Research is proving FA is solvable, cure-able. But because it is not widely known, it is underfunded. 

 

It just made sense. I had to play a part in finding a cure. Along with a strong support system of family and friends, Dr. Wilmot helped me get involved in the local ataxia support group. And my role as a patient and research advocate was born.

EmorySymp2016 agendaI have been fortunate enough to attend over a dozen symposiums and conferences around the country since my diagnosis, six of which were co-hosted by FARA. The annual symposiums with CHOP and the hundreds of attendees and advancements explored paved the way for annual symposiums with USF, UCLA, and now Emory.

FARA bridges the gap between the research community and the patient community, as well as with the government’s role (NIH, FDA, etc.), and connecting people within each. This symposium teamed up FARA and Emory University to do just that. It’s always empowering to learn about the latest advancements in research, clinical trial updates, and meet professionals awarded grants funded by FARA. But it’s so important to connect with other patients and their families, we need all the help we can get. Collaboration speeds up the process. Connecting with each other does more than I will ever be able to understand.

Behind the scenes, a few FAmilies and I reached out to patients to attend; those we knew through past fundraisers, conferences, facebook, you name it(!) within a few hour drive of Atlanta. All the while, FARA and Emory lined up a very impressive agenda of presenters for Saturday, May 14. The morning included an optional blood draw and cheek swab open to all patients and their blood relatives collected by Emory and the University of Alabama in Birmingham, respectively, to study cells and mechanisms crucial to finding effective therapies.

Atlanta Marriott Alpharetta welcomed attendees with plenty to eat. You could feel the excitement in the room as Kyle Bryant kicked off this first-ever Emory symposium. First up to introduce us to FA research was my very own neurologist, Dr. Chip Wilmot. My first thought was how proud this moment made me. It’s all coming together! He discussed his involvement in FA research and acknowledged the power Emory University has to help. Emory has access to the largest number of FA patients with the shortest travel time from their homes to the clinic.

EmorySymp2016 collageIf biology basics and an understanding of frataxin mechanisms makes your head spin, Dr. Wilmot carefully correlated what we see in symptoms of FA patients with how it happens. The theme of the day was the excelling treatment and research pipeline. THREE different pharmaceutical company’s presented promising research leading to each of their active clinical trials in FA, Reata, Retrotope, and Horizon. New findings were discussed in gene therapy and frataxin gene expansion from the University of Florida and UAB’s Stem Cell Institute. Jen Farmer of FARA closed with how much closer we are to treatments, because research is getting there!

Thank you to our symposium sponsor, Horizon Pharma, and to FARA, Emory, and all the presenters for sharing the excitement with us! And to the FAmilies dealing with FA, you are what drive research and the pursuit of a cure, giving me hope and support. FAmily, please sign up for FARA’s Patient Registry or update your info. This is the fastest and easiest way to reach patients for recruitment to clinical trials or for treatment discoveries (registering also attracts pharma interest). And while you are at it, sign up for FARA’s newsletter on FA research updates and fundraising events.

The patient symposium on Saturday was part of a weekend of FARA events, with the first RideATAXIA Atlanta on Sunday, two years in the making, and private screenings of The Ataxian documentary on Sunday and Monday night about an hour and a half east in Athens, Georgia. It truly was an inspiring weekend, and I still can’t get over that it was in my hometown!

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About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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